Billee loves her swing!
We have it hanging in the doorway between the lounge room and computer room.
I've noticed lately that when it stops moving she leans her head and body forward and tries to make it move again.
The control she has of her head is amazing and it's improving all the time.
She is actually able to hold her head upright and then lean forward and then backwards again with nothing supporting her head.
She continues to be mesmerised by her own hands.
She looks at them constantly, moving them around and even laughing at them sometimes!
She is also making lots of great eye contact lately and really trying to 'talk' to us.
All these things may sound so insignificant but for Billee they are huge. Every moment of even the slightest improvement is magnified 1000 times to us because it shows us that she is heading in the right direction.
Even if it is at the slowest speed. We can wait for her, we are in no hurry.
She is the most amazing little person I have ever had the pleasure of knowing!
And what makes it even better is she is my amazing little person!
Friday, October 29, 2010
Wednesday, October 27, 2010
More hospital appointments...
Billee had the final (I hope) test today in relation to her possible reflux / gastro issues.
She had a barium meal test.
This is where they put a yukky liquid into her tummy and then X ray to see if there are any blockages etc...
Its seems everything went well but we will get the results next week.
As well as this she had a gastric stomach emptying study done on Monday.
Two weeks ago she had a camera put down her throat to check for scarring or other signs of reflux and biopsies taken.
At the same time she had a 24 probe inserted into her nose and I had to record info like when she fed, slept, coughed etc....
Hopefully now her Gastroenterologist will have a full picture of what is going on and we might get some answers.
Billee is fast asleep in her bedroom at the moment after spending most of the morning screaming!
I hate days like today when every thing gets messed up.
But Billee is such a strong little girl she takes it all on the chin....Bless her.
She had a barium meal test.
This is where they put a yukky liquid into her tummy and then X ray to see if there are any blockages etc...
Its seems everything went well but we will get the results next week.
As well as this she had a gastric stomach emptying study done on Monday.
Two weeks ago she had a camera put down her throat to check for scarring or other signs of reflux and biopsies taken.
At the same time she had a 24 probe inserted into her nose and I had to record info like when she fed, slept, coughed etc....
Hopefully now her Gastroenterologist will have a full picture of what is going on and we might get some answers.
Billee is fast asleep in her bedroom at the moment after spending most of the morning screaming!
I hate days like today when every thing gets messed up.
But Billee is such a strong little girl she takes it all on the chin....Bless her.
Tuesday, October 26, 2010
Monday, October 25, 2010
A little bump in the road
On Friday I could feel myself getting a sore throat and then on Saturday I woke up feeling awful.
I went straight to my Doctor because I knew it wasn't just a sore throat and I was right I have a bad case of Tonsilitis!
The last time I felt this bad Jaymi was 6 weeks old (she's 10 now).
I spent all day Saturday in bed and only got up on Sunday because we had Billee's birthday party.
I struggled through the afternoon, I'm not sure how!
Today Glenn took Billee to the hospital very early as she had a gastric stomach emptying study booked in and Mum and Dad took the girls to school.
Surfice to say Billee's programme has suffered as a result.
Glenn has been great at holding everything together but he isn't me!! Haha!!
I feel so frustrated because I hate being ill and when I am ill I never remove myself from the family and spend all day in bed.
Seriously though I have had to this time.
I'm hoping everything is back to normal by tomorrow.
I went straight to my Doctor because I knew it wasn't just a sore throat and I was right I have a bad case of Tonsilitis!
The last time I felt this bad Jaymi was 6 weeks old (she's 10 now).
I spent all day Saturday in bed and only got up on Sunday because we had Billee's birthday party.
I struggled through the afternoon, I'm not sure how!
Today Glenn took Billee to the hospital very early as she had a gastric stomach emptying study booked in and Mum and Dad took the girls to school.
Surfice to say Billee's programme has suffered as a result.
Glenn has been great at holding everything together but he isn't me!! Haha!!
I feel so frustrated because I hate being ill and when I am ill I never remove myself from the family and spend all day in bed.
Seriously though I have had to this time.
I'm hoping everything is back to normal by tomorrow.
Friday, October 22, 2010
Chat chat....
Well the new exercises are going well!
Billee has been really trying to talk lately. When I talk to her she looks me right in the eye and moves her mouth like she is really trying to talk back!
We decreased her anti seizure meds again this week. In 3 weeks time she will be off the second one and then we will only have 1 left!
We're having a little party for her on Sunday for her birthday so I will add some new photos.
Billee has been really trying to talk lately. When I talk to her she looks me right in the eye and moves her mouth like she is really trying to talk back!
We decreased her anti seizure meds again this week. In 3 weeks time she will be off the second one and then we will only have 1 left!
We're having a little party for her on Sunday for her birthday so I will add some new photos.
Wednesday, October 20, 2010
New 2 week programme
I spoke with Claudie Gordon - Pomares this morning at our fortnightly phone appointment.
We discussed my recent report, Billee's reactions to the last set of exercises and her new programme for the next 2 weeks.
We always start with the same things:
- Smell & gentle claw every hour to increase seratonin.
- Classical music
- MAPS 1
- Stretches
This time we are continuing with working on rolling and kneeling.
We also have 3 therma lines / finger lines and a warm dough exercise.
Also an exercise working with art and texture.
As I usually do, I typed out a record keeping sheet and blue tacked it to the wall so that we are able to tick stuff off as we do it.
Hubby and I then go through the programme once together to ensure we both know what to do and we usually video some bits to send to Claudie if we are unsure.
This time she would like videos in a couple of days so that she is able to see Billee's reactions to the new set of exercises.
We will start this tonight and see how she goes......
We discussed my recent report, Billee's reactions to the last set of exercises and her new programme for the next 2 weeks.
We always start with the same things:
- Smell & gentle claw every hour to increase seratonin.
- Classical music
- MAPS 1
- Stretches
This time we are continuing with working on rolling and kneeling.
We also have 3 therma lines / finger lines and a warm dough exercise.
Also an exercise working with art and texture.
As I usually do, I typed out a record keeping sheet and blue tacked it to the wall so that we are able to tick stuff off as we do it.
Hubby and I then go through the programme once together to ensure we both know what to do and we usually video some bits to send to Claudie if we are unsure.
This time she would like videos in a couple of days so that she is able to see Billee's reactions to the new set of exercises.
We will start this tonight and see how she goes......
Tuesday, October 19, 2010
Happy 3rd Birthday Billee!!
Passing the dangerous time line of two years is a major accomplishment for a child with Lissencephaly. The lack of connections between the major centres of the brain and poor motor connectivity puts the child at risk.
3 years ago today we were blessed with the most precious, bravest, strongest most amazing baby girl!
Yes 3 years ago today our beautiful little princess Billee was born.
Over the past 3 years there have been lots of tears, heart ache, stress, anger, upset and worry.
BUT the past 3 years have also been full of love, laughter, hope, joy, amazement and happiness.
In the past 3 years we have met some wonderful people, learnt about some extremely special children and realised what is really important in this life.
In the past 3 years our amazing little Billee has taught us so much more than we could have ever taught her.
She has taught us the true meaning of unconditional love and made us slow down and appreciate things in such a way we never did before.
She has shown her 2 big sisters how much she loves and adores them and they have learnt to notice her abilities instead of her disabilities.
She continues to be an inspiration to us all.............................
.jpg)
3 years ago today we were blessed with the most precious, bravest, strongest most amazing baby girl!
Yes 3 years ago today our beautiful little princess Billee was born.
Over the past 3 years there have been lots of tears, heart ache, stress, anger, upset and worry.
BUT the past 3 years have also been full of love, laughter, hope, joy, amazement and happiness.
In the past 3 years we have met some wonderful people, learnt about some extremely special children and realised what is really important in this life.
In the past 3 years our amazing little Billee has taught us so much more than we could have ever taught her.
She has taught us the true meaning of unconditional love and made us slow down and appreciate things in such a way we never did before.
She has shown her 2 big sisters how much she loves and adores them and they have learnt to notice her abilities instead of her disabilities.
She continues to be an inspiration to us all.............................
.jpg)
Summarising the past 6 months on MAPS
In order for me to move forward and blog regularly I feel it very necesary to summarise Billee's MAPS programme and progress over the past 6 months.
Claudie explained to me that the treatment plan has been to focus, first, on her serotonin production to allow the growth of new cells, building good communication between the two hemispheres of the brain using the corpus collossum and cerebellum. No serious rebuilding exercises would be efficient without the fuel which is serotonin, and the core communication tool.
We used as the ground foundation of the treatment things as gentle as smelling nice aromas, soft touch on her body and face, and of course, listening of classical music. The first exercise used contrast of temperature, all very mild, to the hands, then teaching Billee's brain about textures.
We do what we call gentle stretches. MAPS takes care of the entire body and movement of the joints is vital for a non mobile child. 5 times a day, we have a set of soft stretches involving the hips, the ankles, the wrists and the spine. We also have a soft stretch of the arm.
Every two weeks we have a brand new set of games for her communication skills, for her general development, for the control of the hand, arm and legs. We have a serious plan around Billee's legs which cannot, as we start the treatment, be brought straight and close to each other, which is key for standing and walking. Four months into the treatment, we are able to do this and consequently can include new exercises for the leg and the foot, with new lines of communication between the brain and the foot.
The strategy in MAPS is to teach the brain to send the right messages to the body. We do not work on training the body with the hope this training will change the brain. This is very tedious and demanding and does not fit our family energy. With MAPS, we tell the brain where the foot is, how it feels, and gradually we can see the brain telling the foot to do tasks which are normal, such as retrieving to the contact of a funny texture.
We worked on weight bearing in a very novel manner and without causing any stress or pain to Billee, using the laws of physics and pressure instead of controlled standing.
When Billee started to show good response to the exercises, we started the day program which could be compared to a home school pre K program adapted to her, with play, reading, working out.
Billee has learnt new but essential functions such as smelling. She has very particular fast and short sniffs as soon as we bring a smell she likes to her nose.
She is full of energy and lets us know when something is not to her liking.
After Claudie's second evaluation during which Billee showed all what she had learnt and also how much she was ready to do more, we increased the level of body exercise and demand, still in a very moderate tone and respectful of Billee's reaction and response. We are now working on the voluntary movement of the arm and Billee is now showing very serious voluntary movements in exercises where she is kneeling and moving with assistance toward the mat.
Six months ago, Billee was poorly mobile but most importantly, poorly developed in voluntary movement. She was aware of her surrounding and communicating with some sounds but had some difficulty tracking and focusing visually.
After six months of MAPS, some major developments have occurred :
-her eye tracking has improved and she is able to hold eye contact for several minute while "conversing". Her better facial tone allows more facial expression
- she blows rasberries and has several mouth muscles and tongue sounds.
-she discovered her hands visually as well as dynamically.
-her back tone and control of back, side and neck muscle has improved if lifted from the mat she responds with several appropriate organised muscle contractions.
-she has now control of the arm movement in a protective motion when lifted from kneeling position and lowering toward the mat. This is a crucial movement demonstrating the connection of the brain to arm and hand.
- her response to tactile information to hand and foot is appropriate and normal.
- she added sounds to her vocalization.
I hope this explains as much as possible for now and that as we move forward I am able to record observations as they happen.
Claudie explained to me that the treatment plan has been to focus, first, on her serotonin production to allow the growth of new cells, building good communication between the two hemispheres of the brain using the corpus collossum and cerebellum. No serious rebuilding exercises would be efficient without the fuel which is serotonin, and the core communication tool.
We used as the ground foundation of the treatment things as gentle as smelling nice aromas, soft touch on her body and face, and of course, listening of classical music. The first exercise used contrast of temperature, all very mild, to the hands, then teaching Billee's brain about textures.
We do what we call gentle stretches. MAPS takes care of the entire body and movement of the joints is vital for a non mobile child. 5 times a day, we have a set of soft stretches involving the hips, the ankles, the wrists and the spine. We also have a soft stretch of the arm.
Every two weeks we have a brand new set of games for her communication skills, for her general development, for the control of the hand, arm and legs. We have a serious plan around Billee's legs which cannot, as we start the treatment, be brought straight and close to each other, which is key for standing and walking. Four months into the treatment, we are able to do this and consequently can include new exercises for the leg and the foot, with new lines of communication between the brain and the foot.
The strategy in MAPS is to teach the brain to send the right messages to the body. We do not work on training the body with the hope this training will change the brain. This is very tedious and demanding and does not fit our family energy. With MAPS, we tell the brain where the foot is, how it feels, and gradually we can see the brain telling the foot to do tasks which are normal, such as retrieving to the contact of a funny texture.
We worked on weight bearing in a very novel manner and without causing any stress or pain to Billee, using the laws of physics and pressure instead of controlled standing.
When Billee started to show good response to the exercises, we started the day program which could be compared to a home school pre K program adapted to her, with play, reading, working out.
Billee has learnt new but essential functions such as smelling. She has very particular fast and short sniffs as soon as we bring a smell she likes to her nose.
She is full of energy and lets us know when something is not to her liking.
After Claudie's second evaluation during which Billee showed all what she had learnt and also how much she was ready to do more, we increased the level of body exercise and demand, still in a very moderate tone and respectful of Billee's reaction and response. We are now working on the voluntary movement of the arm and Billee is now showing very serious voluntary movements in exercises where she is kneeling and moving with assistance toward the mat.
Six months ago, Billee was poorly mobile but most importantly, poorly developed in voluntary movement. She was aware of her surrounding and communicating with some sounds but had some difficulty tracking and focusing visually.
After six months of MAPS, some major developments have occurred :
-her eye tracking has improved and she is able to hold eye contact for several minute while "conversing". Her better facial tone allows more facial expression
- she blows rasberries and has several mouth muscles and tongue sounds.
-she discovered her hands visually as well as dynamically.
-her back tone and control of back, side and neck muscle has improved if lifted from the mat she responds with several appropriate organised muscle contractions.
-she has now control of the arm movement in a protective motion when lifted from kneeling position and lowering toward the mat. This is a crucial movement demonstrating the connection of the brain to arm and hand.
- her response to tactile information to hand and foot is appropriate and normal.
- she added sounds to her vocalization.
I hope this explains as much as possible for now and that as we move forward I am able to record observations as they happen.
Sunday, October 17, 2010
It's been a long time....
I know it's been a long time since I blogged......nearly 6 months!
I've actually been prompted into action by Kim who e mailed me yesterday telling me of another mother also doing MAPS with her child.
Apparently she wanted to start a blog about their experience with MAPS and Kim had helped get her started.
I have now decided to not only write in this regulary but also to publish it so that others can also read it (scary thought!).
My next post will basically summarise the past 6 months on the MAPS programme and then hopefully from then on I can record things as they happen.
I've actually been prompted into action by Kim who e mailed me yesterday telling me of another mother also doing MAPS with her child.
Apparently she wanted to start a blog about their experience with MAPS and Kim had helped get her started.
I have now decided to not only write in this regulary but also to publish it so that others can also read it (scary thought!).
My next post will basically summarise the past 6 months on the MAPS programme and then hopefully from then on I can record things as they happen.
Subscribe to:
Posts (Atom)